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1124901

registered interest
date	07/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Nusinersen
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what discussions they have had with (1) NICE, (2) NHS England, and (3) Biogen, on a Managed Access Agreement for Spinal Muscular Atrophy treatment, Spinraza.
tabling member printed	Baroness Thomas of Winchester
uin	HL15576
answer	answer is ministerial correction date of answer 17/05/2019 answer text <p>Departmental officials are in regular contact with colleagues in the National Institute for Health and Care Excellence (NICE) and NHS England about a range of issues, including progress in discussions about a potential managed access agreement for Spinraza (nusinersen). Ministers have also held meetings with Biogen, NICE and NHS England on a number of occasions, at which the availability of Spinraza was discussed.</p><p>NHS England and NICE have made stakeholders and the public aware of the outcome of its appraisal committee meeting and NICE is now able to recommend the use of Spinraza for National Health Service patients in England, subject to a managed access agreement agreed between NHS England and Biogen. The final appraisal document will be published in due course.</p><p> </p> answering member printed Baroness Blackwood of North Oxford grouped question UIN HL15577 question first answered 17/05/2019 11:07:46 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	3785 label Biography information for Baroness Thomas of Winchester

1124902

registered interest
date	07/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	National Institute for Health and Care Excellence
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government when they estimate that NICE will publish the outcome of the NICE Evaluation Committee meeting held on 6 March.
tabling member printed	Baroness Thomas of Winchester
uin	HL15577
answer	answer is ministerial correction date of answer 17/05/2019 answer text <p>Departmental officials are in regular contact with colleagues in the National Institute for Health and Care Excellence (NICE) and NHS England about a range of issues, including progress in discussions about a potential managed access agreement for Spinraza (nusinersen). Ministers have also held meetings with Biogen, NICE and NHS England on a number of occasions, at which the availability of Spinraza was discussed.</p><p>NHS England and NICE have made stakeholders and the public aware of the outcome of its appraisal committee meeting and NICE is now able to recommend the use of Spinraza for National Health Service patients in England, subject to a managed access agreement agreed between NHS England and Biogen. The final appraisal document will be published in due course.</p><p> </p> answering member printed Baroness Blackwood of North Oxford grouped question UIN HL15576 question first answered 17/05/2019 11:07:46 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	3785 label Biography information for Baroness Thomas of Winchester

1124918

registered interest
date	07/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Haemophilia: Medical Treatments
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that haemophilia patients receive (a) appropriate access to physiotherapy, (b) a regular clinical review, and (c) tailored dosing of treatments in accordance with NHS England’s service specification.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	251321
answer	answer is ministerial correction date of answer 15/05/2019 answer text <p>Regular clinical reviews of patients with severe and moderate haemophilia and access to physiotherapy services are specified within the service specification for haemophilia which is available at the following link:</p><p><a href="https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf" target="_blank">https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf</a></p><p>In addition, the Haemophilia Quality Dashboard has a metric specifically in relation to the proportion of severe Haemophilia patients who have had an annual review. Where local commissioning teams are made aware that haemophilia patients do not have access to appropriate care then local action plans will be agreed to rectify this.</p><p>The service specification for haemophilia currently does not require that haemophilia patients receive tailored dosing of treatment. However, commissioners consider that this would represent good practice. NHS England has supported clinical teams to provide tailored dosing, within the parameters of the agreed commissioning criteria and guidelines, by making a wide range of products available for reimbursement.</p><p>To date, all licensed and currently marketed products for haemophilia are available for reimbursement. Some products have been limited to Haemophilia Comprehensive Care Centres due to specific requirements for supporting services and expertise (these are products for patients with inhibitors).</p><p>NHS England wants all patients with lifelong conditions to be engaged in the management of their condition. NHS England, in conjunction with the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO), believes that tools like Haemtrack are useful in achieving this aim. NHS England is aware of evidence that indicates, but does not confirm, that patients who use Haemtrack have better clinical outcomes than patients who do not. NHS England supports UKHCDO via the National Haemophilia Database to provide further data and evidence demonstrating the value and clinical benefits of Haemtrack.</p><p>The Commercial Medicines Unit has two national framework agreements in place that provide access to recombinant factor VIII (rFVIII) haemophilia products. The one licensed Extended Half Life-Factor VIII product available in the UK has been funded since September 2016 and a significant number of patients are now treated with this product. NHS England and other UK Health Commissioners work closely with clinicians and patient representatives to ensure that the frameworks continue to meet clinical need whilst delivering good value to the National Health Service.</p> answering member constituency South Ribble answering member printed Seema Kennedy grouped question UIN 251322 251323 251324 question first answered 15/05/2019 16:14:44 answering member 4455 label Biography information for Seema Kennedy
tabling member	4131 label Biography information for Jim Shannon

1124919

registered interest
date	07/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Haemophilia: Medical Treatments
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what assessment he has made of the effect of the Commercial Medicines Unit’s national tender framework for factor VIII haemophilia products on patient access to extended half-life medicines.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	251322
answer	answer is ministerial correction date of answer 15/05/2019 answer text <p>Regular clinical reviews of patients with severe and moderate haemophilia and access to physiotherapy services are specified within the service specification for haemophilia which is available at the following link:</p><p><a href="https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf" target="_blank">https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf</a></p><p>In addition, the Haemophilia Quality Dashboard has a metric specifically in relation to the proportion of severe Haemophilia patients who have had an annual review. Where local commissioning teams are made aware that haemophilia patients do not have access to appropriate care then local action plans will be agreed to rectify this.</p><p>The service specification for haemophilia currently does not require that haemophilia patients receive tailored dosing of treatment. However, commissioners consider that this would represent good practice. NHS England has supported clinical teams to provide tailored dosing, within the parameters of the agreed commissioning criteria and guidelines, by making a wide range of products available for reimbursement.</p><p>To date, all licensed and currently marketed products for haemophilia are available for reimbursement. Some products have been limited to Haemophilia Comprehensive Care Centres due to specific requirements for supporting services and expertise (these are products for patients with inhibitors).</p><p>NHS England wants all patients with lifelong conditions to be engaged in the management of their condition. NHS England, in conjunction with the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO), believes that tools like Haemtrack are useful in achieving this aim. NHS England is aware of evidence that indicates, but does not confirm, that patients who use Haemtrack have better clinical outcomes than patients who do not. NHS England supports UKHCDO via the National Haemophilia Database to provide further data and evidence demonstrating the value and clinical benefits of Haemtrack.</p><p>The Commercial Medicines Unit has two national framework agreements in place that provide access to recombinant factor VIII (rFVIII) haemophilia products. The one licensed Extended Half Life-Factor VIII product available in the UK has been funded since September 2016 and a significant number of patients are now treated with this product. NHS England and other UK Health Commissioners work closely with clinicians and patient representatives to ensure that the frameworks continue to meet clinical need whilst delivering good value to the National Health Service.</p> answering member constituency South Ribble answering member printed Seema Kennedy grouped question UIN 251321 251323 251324 question first answered 15/05/2019 16:14:44 answering member 4455 label Biography information for Seema Kennedy
tabling member	4131 label Biography information for Jim Shannon

1124920

registered interest
date	07/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Blood Diseases: Medical Treatments
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he NHS England is taking to ensure that patients with bleeding disorders have adequate access to treatment options that meet individual patient need.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	251323
answer	answer is ministerial correction date of answer 15/05/2019 answer text <p>Regular clinical reviews of patients with severe and moderate haemophilia and access to physiotherapy services are specified within the service specification for haemophilia which is available at the following link:</p><p><a href="https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf" target="_blank">https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf</a></p><p>In addition, the Haemophilia Quality Dashboard has a metric specifically in relation to the proportion of severe Haemophilia patients who have had an annual review. Where local commissioning teams are made aware that haemophilia patients do not have access to appropriate care then local action plans will be agreed to rectify this.</p><p>The service specification for haemophilia currently does not require that haemophilia patients receive tailored dosing of treatment. However, commissioners consider that this would represent good practice. NHS England has supported clinical teams to provide tailored dosing, within the parameters of the agreed commissioning criteria and guidelines, by making a wide range of products available for reimbursement.</p><p>To date, all licensed and currently marketed products for haemophilia are available for reimbursement. Some products have been limited to Haemophilia Comprehensive Care Centres due to specific requirements for supporting services and expertise (these are products for patients with inhibitors).</p><p>NHS England wants all patients with lifelong conditions to be engaged in the management of their condition. NHS England, in conjunction with the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO), believes that tools like Haemtrack are useful in achieving this aim. NHS England is aware of evidence that indicates, but does not confirm, that patients who use Haemtrack have better clinical outcomes than patients who do not. NHS England supports UKHCDO via the National Haemophilia Database to provide further data and evidence demonstrating the value and clinical benefits of Haemtrack.</p><p>The Commercial Medicines Unit has two national framework agreements in place that provide access to recombinant factor VIII (rFVIII) haemophilia products. The one licensed Extended Half Life-Factor VIII product available in the UK has been funded since September 2016 and a significant number of patients are now treated with this product. NHS England and other UK Health Commissioners work closely with clinicians and patient representatives to ensure that the frameworks continue to meet clinical need whilst delivering good value to the National Health Service.</p> answering member constituency South Ribble answering member printed Seema Kennedy grouped question UIN 251321 251322 251324 question first answered 15/05/2019 16:14:44 answering member 4455 label Biography information for Seema Kennedy
tabling member	4131 label Biography information for Jim Shannon

1124720

registered interest
date	03/05/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Idiopathic Pulmonary Fibrosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he is taking to improve (a) early diagnosis and (b) treatment of idiopathic pulmonary fibrosis.
tabling member constituency	Stevenage
tabling member printed	Stephen McPartland
uin	250788
answer	answer is ministerial correction date of answer 15/05/2019 answer text <p>The United Kingdom Rare Disease Strategy, published in 2013, sets out our commitment to raising awareness about all rare diseases including idiopathic pulmonary fibrosis (IPF) and our strategic vision for improving the lives of all those affected. The Strategy promotes improvements to ensure that people living with a rare disease receive high-quality care.</p><p>The Government recognizes the need for awareness raising and training of health care professionals for rare diseases. This is being taken forward through the work of the UK Rare Diseases Policy Board and NHS England’s Rare Diseases Implementation plan, which commits NHS England to engaging with the Royal College of General Practitioners (GPs) and the Nursing and Midwifery Council on opportunities for GPs and health visitors to recognise and facilitate earlier diagnosis of rare diseases.</p><p>There are limited drug treatment options for IPF and two drugs, Pirfenidone and Nintedanib, are commissioned following National Institute for Health and Care Excellence Technology Appraisals. Alongside this, the Department funds research into rare diseases such as IPF through the National Institute for Health Research (NIHR).</p> answering member constituency South Ribble answering member printed Seema Kennedy question first answered 15/05/2019 16:35:47 answering member 4455 label Biography information for Seema Kennedy
tabling member	4093 label Biography information for Stephen McPartland